Monday, February 20, 2012

Medical Update

I was super chronic sick...I have not been doing well at all lately...so Tim drove us there and back...it helped a lot.

His gastrin level is holding steady (16 times the normal amount but not rising--very good), he is not anemic (barely not--but at least he isn't!), and he has gained weight!!! : )

We spoke about his episodes of fatigue, vomiting, etc.. and decided to keep treating the way we have been knowing there isn't anything else better that we can do for him right now.

He told us that what's going on with Gavin makes him crazy because he wants to fix it and he just can't.

He said there just isn't anything else we can do unless things take a turn for the worse drastically, and none of those things we would do are good things:

He could get a G/J tube, use TPN with a central line, use IV fluids again with a central line, or we can surgically remove half his stomach.

So as long as he is growing, he isn't showing signs of bleeding or ulcers, and his labs are stable--we need to let him be, knowing he has been through the ringer in back in his short little life...and knowing full well that there isn't anything we can do to fix this.

He told us that this is as good as Gavin is ever going to be, and we all need to accept that.

In a strange way, I felt--I feel--okay with that. In my heart, I knew it already--but I suppose him and I both needed to acknowledge it, out-loud.

Why am I fine with it?

Because God created him, knowing all his medical imperfections, and has a wonderful plan for His life. I have to accept and be grateful for that plan, regardless of what it is.

Ultimately, our son belongs to the Lord, not us.

Further, we don't have to do those hard things now....I am ecstatic that we aren't there yet....I pray we never get there.

I am thrilled that he has gained weight in-spite of how hard we work to make that happen, and I love that his gastrin level isn't continuing to climb and that at least right now, his labs are good.

Even though his life isn't normal, and even though he doesn't ever have a day where he feels great the entire time, lately, he has been better more often than not because we are learning what his limits are, and we are taking extreme measures to not cross them.

We've been letting him sleep. A lot. Like 12 hours a night. Plus, he's been napping before baseball and napping before swimming.

He's been to one swim lesson and 4 baseball practices so far and has done awesome...it make my heart leap for joy...what we are doing right now, is working....right now!

He's not missing med doses...he gets them every 3-4 hours throughout the day...he has more for breakthrough episodes and so far, they work.

All and all, he is good, when you stand back and consider how much he has going on with his little 6 year old body.

I recently recall praying that he wouldn't need to be hospitalized this Spring, like every other Spring, because I have so much on my medical plate right now.

I remember feeling burdened in prayer and that I told the Lord that I couldn't handle both him and I needing to be in and out of the hospital at the same time...

Today, I felt like He answered that prayer.

Nothing is on the books for him in the hospital, and if we keep doing what we're doing, hopefully nothing will be in the near future...

even with his bad days, we know how to make them better...and I have to recognize that this is a gift that some families don't have the luxury of having.

It's a "luxury" that I am thankful for.

So, now I am allowed the time and energy to focus on getting me to a better place medically--if at all possible.

I have a bunch of appointments in the next month but the most important are with an Oncologist on Friday for a consult on finally getting a port-a-cath, and I am having a muscle biopsy at UCLA Medical Center on March 2nd. A few weeks after that, I will go back to UCLA to meet with my neuromuscular specialist for the results and hopefully, a treatment plan.

I am still getting IV's weekly at home, but they haven't been going well. My veins collapse and I only have one spot they can even get to work for a little while....the whole bag of fluids doesn't make it into my vein.

That port can't come soon enough.

Based on badly I am feeling, and how skeptical my home health nurses have become that they can help me anymore, I suspect that I will likely end up in the ER this week for hydration instead.

And perhaps that nice ER doc I saw last time will follow through and order me a PICC to hold me over til I hopefully get approved for a port...

Please pray for me...I need it and I very much appreciate it.

It's so hard to feel this bad everyday...

to not feel like a burden....

to not feel guilty...

to be in pain almost daily, regardless of what I do or don't do.

I need something to work....

and I pray that in all these appointments and tests, we will find something that will help...

{Welcome}

Jesus follower. Wife. Homeschooling mom. Beach lover. Professional photographer. Print designer on Etsy. Pretend nurse to many incurable chronic diseases. Lover of coffee, sunsets, waves, bright colors, a good snuggle with lots of furry cozy blankets, love stories, all that makes me laugh, and one who strives to choose joy in the doldrums of everyday life.